If you’ve read here before (or if you know me in person) you know that I have Spinal Muscular Atrophy (SMA) and I’m in a wheelchair. SMA is an incredibly rare disease, and for most of my life, I only knew two other people who had SMA, and one of them is my sister! And because SMA is so rare, and because there are still a lot of things that doctors don’t know about it, my family and I became the de facto experts about living with the disease. That’s not to say that doctors didn’t help us at all, but a lot of times, it’s the day-to-day experiences about living with SMA that you’re not sure how to deal with – going away to college, getting a job, getting attendant care.
But a few years ago we found a few SMA groups on Facebook. It’s been really fascinating to join in and read the posts of other families who are also living with SMA. It’s comforting to see people posting who are older than me – people who have been able to successfully navigate living with SMA as an adult. It’s also exciting, in a way, to see other people posting about things that we wondered about too – it’s that little zing of knowing that there are people out there who have had the same experiences! And it’s amazing to know that there is a place I can turn to with questions, where I’ll get lots and lots of answers. The group has also helped me learn a lot about a new treatment for SMA, but that’s a lot to explain and another post all on its own.
Having the ability to chat with people who are experiencing the same things that I am, and who can answer questions for me when I don’t know where else I could find the answers, is so vital! Social media is great for staying in touch with family and friends, but I love that it’s also connected me to another community of people who would never have met, otherwise.